The chronicle of a family thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.

Wednesday, September 30, 2009

'earing Update

So the news is Simon is not deaf.

Looks like there is really good responsiveness in terms of his ear drum working and cochlea responding but there were some funny dips below 'normal' on the main test.

Meaning...nothing conclusive and we have to come back in 3-6 months when he's less likely to be squirmy for the sensitive in the ear test and more likely to be reliable in the test for older kids.

I know I should be relieved AND to be back in that inconclusive place with more tests to come make me just a little nuts.

We've certainly 'set up house' here before. Just waiting and letting the little man be on his own timeline. Jaime and I know this drill. I know this drill. I live this drill on a minute to minute basis with his heart, his eating, his walking, his talking. Like any baby/toddler he is on his own schedule. I feel like there's just a little more at stake with Simon. (I know there's everything 'at stake' for every child, we just know up front where the little man is coming from)

Am I thrilled that Simon does not seem to have significant hearing loss? Yes!!!

Did I want to leap for joy every time he turned his little head toward the sound coming from the speaker to his right or left? Yes!!!

Did I want to strangle the hearing specialist when she kept saying "well, he's not deaf." YES!!!

For sure there was a part of me that just wished for something definitive. Absolutely not the "Simon has significant hearing loss". Absolutely not. He has a brilliant opera career ahead of him (right now as a Soprano which means he could do duets with his PopPop Bernie).

But something definitive meant there was something to do other than wait. Waiting is hard. Waiting for more tests, waiting for his heart function to improve, waiting for his immune system to get stronger, waiting for more words so that we can really begin to understand what his days are like, waiting for him to take food in by mouth (for obvious reasons coming from two foodies like his mommies), waiting for him to start walking, and now waiting for more months to see if there is in fact hearing loss.

Something definitive meant something to do. Either, check it off and realize that Simon is just a willful little rascal that has no interest in low flying planes or that there's damage that wouldn't be reasonably unexpected given the medications that he got during his two bacterial infections in the hospital. And then what comes after....relax or figure out a plan for him to live and thrive. I do that. I can do that. I can do either the former or the latter really well actually.

Instead we wait. We go swimming. We celebrate little/big things (like first steps), and we love him up as best we can. The last one we can do so well and so easily. Let us not forget who we're talking about here.

"Uhhh, you better not. I am FABULOUS!!"

"I have my hair done regularly so I can keep looking good...for you"

"Plus I am always looking for the newest headwear in the fashion world. Just to be FABULOUS for you and make you love me!"

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About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com